I had another follow up with my NL today, and I told him that my headaches have been getting worse this past month. Told him that I've been getting some neck pain, dizziness especially when trying to stretch my neck to see if that will help the headaches...his answer is that it's all normal for migraines. ??
I asked about more testing to make sure it's not my neck or spine causing the headaches, and he basically refused even though I've only had the brain MRI and an EEG. He said that I don't have neck problems...um? really? I thought I just told you I'm having neck pain.
Then my husband asked about the MRI report and it saying about the low lying cerebellar tonsils. You know what he said about it? He said it's the Chiari malformation, but it's "subtle" and when asked if it would cause my headaches, he said no!
I walked out of the office, and told the receptionist that I will not be coming back. I can not deal with handing me more prescriptions and not telling me what they are unless I asked, and refusing to do MRI of the spine/neck any longer.
I'm at a loss, and have never been so upset from an appointment before!
I’m so sorry you had to go through that:( Sadly, this happens way too often. Most doctors lack sufficient knowledge about Chiari…sad, but true. You should really see a NS that specializes in Chiari and related disorders. There are lists of patient recommended doctors…You can find links on our resources and doctors page. You may need to travel out of your area to see a specialist, but from what I’ve heard it’s well worth it. My 1st NS, that diagnosed me, said that my 4mm herniation and syrinx were too small to be causing any of my pain and other symptoms. I have gotten significantly worse since then, so he was obviously wrong. I’m going to see a NS that specializes in Chiari on Monday. I highly recommend that you do the same. I hope you get the care you need and deserve soon!
I felt the same way this week. So upsetting when the doctors don't believe you. What are your headaches like? I am having the same thing. Headaches, dizziness and hazy vision are all getting worse this past month and 2 NS stated it was not the Chiari. Then what the heck is it? I have a 7mm herniation and wonder how they can tell me that has nothing to do with my pain. I am going back to my neurologist to see if he will send me for further testing. I only had the EMG's and cervical and brain MRI's. Good luck to you and find another doctor that will test you further.
No, Dr. Oro's office said that since it says on my MRI report that it says "low lying cerebellar tonsils without evidence of Chiari malformation." that they won't schedule me an appointment at this time. I have the option of sending in my MRI images and pay $75 for Dr. Oro to review them himself to determine if I can get an appointment.
razzle51 said:
are you saying that dr oro cant see you because you have medicaid ???
My headaches have actually usually been on my right side a few inches behind my ear, but those I can deal with usually. This past month I've been having horrible ones in the back of my head that feel like I've been hit with a baseball bat. I've had it several times lately where I have to sit down because I start feeling weak and dizzy, but my NL said that's just part of migraines.
Momof4 said:
I felt the same way this week. So upsetting when the doctors don't believe you. What are your headaches like? I am having the same thing. Headaches, dizziness and hazy vision are all getting worse this past month and 2 NS stated it was not the Chiari. Then what the heck is it? I have a 7mm herniation and wonder how they can tell me that has nothing to do with my pain. I am going back to my neurologist to see if he will send me for further testing. I only had the EMG's and cervical and brain MRI's. Good luck to you and find another doctor that will test you further.
He definitely is something, I won't say all the choice words that I have said about him. Thankfully my husband is on board and 100% agrees with me. He's the only one that's 100% supportive. Most of my friends don't understand, and are getting angry at me for not just taking the meds that are handed to me, and suck it up. If they only knew...
Lisa W said:
id say your Neurologist is a knuckelhead and thats putting it lightly ......FIND ANOTHER NEUROLOGIST!!!!...
Or heck even cheaper and easier is send in the CD;s to dr.oro and pay the 75$...once and done then you have a
Oh the names we couold call some of these brain dead doctors, if they only knew how their patients really feel about them and their treatment!- sometimes I would love a voo-doo-doll that actually worked and give some of them their own medicine!! --LMAO---
the hardest part is others not understanding, one of my friends had no clue until i shared with her "my story" once she read that, she then understood......Where would we be without those wonderful/supportive husbands of ours? up shiz creek- more or less-lol- its wonderful you have such a man by your side- dont worry about what others think and when they ask how you are doing just keep it simple for them, if they really want to know they will ask more questions- thats when you truly find out who really cares..
You must have gone to the same NL that I did - only my NL let me have a C-Spine MRI but refused me a Brain MRI. He said, "I'm not going to indulge you" - meaning my hypochondria - despite my excruiating headaches. He insisted, "You don't need a brain MRI. I told you that you have migraines." Well, it turned out that I had much, much more. Why do some of these doctors play God with their patients lives?